I’m a child carer

Lili shops, cooks, cleans and helps to look after her disabled mother, and her younger brother and sister. Kate Hilpern meets a bright, creative eight-year-old girl, who is one of thousands of Britain’s young carers

‘I’m up at 6.45am to do bottles for my brother and sister’ … Lili Kirtin-Grossman and mum Sarah. Photograph: Sarah Lee for the Guardian

Lili Kirtin-Grossman has all the traits you might expect in an eight-year-old girl – she’s bubbly, excitable and animated. But this was not what I’d been anticipating. Lili, you see, is a young carer who, for as long as she can remember, has looked after her mother Sarah, 37, who is registered disabled with scoliosis of the spine and bipolar disorder. It also falls upon Lili to help care for her three-year-old brother, Tyler, who is thought to have autism and attention deficit hyperactivity disorder, and her sister, Kaya, two.

I had even wondered whether the Aquabeads craft box that my own seven-year-old daughter helped me choose as a gift for Lili would seem rather babyish. But she’s clearly thrilled and as soon as we’ve settled in the living room, she wastes no time opening it up and works on it with enviable precision and meticulousness on the floor beside me.

Here lies the first clue. After all, this disciplined, orderly nature of approaching things really is the only way to be a young carer. “I have to do a lot to help Mummy,” says Lili, as she nips up to the kitchen area to get some scissors to open some of the bead packets. “In the morning, I’m up around 6.45am. I come downstairs and do the bottles for Tyler and Kaya and make breakfast, with or without Mummy, depending on how well she is. I run a bath for Mummy and help her get dressed, especially with things like zips and shoes, as well as making sure she takes her medicine. Then, when I’ve helped my brother and sister get dressed and I’ve washed up, I go to school.”

After school, Lili helps to make dinner and does the washing, vacuuming and cleaning, all the while helping with her brother and sister who, she says “are into everything, and I mean everything”. At least a couple of times a week, there’s the shopping to do, too. “I really like doing it all, but this is my absolute favourite thing,” she smiles. “Mummy waits outside Sainsbury’s in the car with my brother and sister while I go in to buy the food.”

What do the assistants say? I ask. “Sometimes, they look surprised,” she shrugs. “But then again, I use the self-scanner most of the time.”

Sarah laughs. “I didn’t even know she knew how to until last week,” she says, impressed.

Lili is used to people looking surprised. Most people – even her teachers and friends at school – are amazed when they learn a little about what life is like for her. And this, she says, is why she made the decision to tell a newspaper. Normally, alarm bells would ring for me at the thought of interviewing someone so young, particularly about the most intricate details of her daily life. But Lili was adamant and, significantly, both her mother and Carers Trust, have backed her all the way.

“We know there are 170,000 young carers in England and Wales – that is, people under the age of 18, who provide unpaid care for a family member or a friend,” says Anna Morris, the charity’s senior policy manager. “But those are only the ones we know about from the census. Research by the BBC in 2010 found the real figure is 700,000. Yet most people have absolutely no idea what these youngsters go through. Lili was really keen to help us raise awareness and having appeared in a short film for us on YouTube to do just that, she decided she wanted to go one step further.”

The reasons that children wind up as carers vary. For some, it’s because someone in their life has a physical disability or illness; for others it’s because the person has a mental health condition. For Lili, it’s both. Then there are children who care for people with drug or alcohol issues, or who have someone in their lives in need of short-term care. Usually, there is some help from the likes of social services and health professionals, but it’s often not nearly enough.

“The responsibilities of young carers vary considerably,” says Morris. “It can be practical things, such as helping a disabled parent out of bed and bathing them, or cooking for a sibling with Down’s syndrome and walking them to school. Alternatively, it can be a more emotionally supportive role.”

Again, for Lili it’s both. “You know when Mum is about to act manic because her body language changes,” says Lili, who has by now made me a cup of tea, suggesting that it might be more sensible to put it on the table than on the floor where I was about to set it down (she’s right, of course).

She explains that the changing body language spells danger. “I just try to keep things calm, even if Mum acts hyper,” she says.

Not surprisingly, all this has taken a toll on Lili, who suffers from insomnia and anxiety. “She particularly panics if someone other than me picks her up from school,” says Sarah, who has now managed to hobble into her hard-backed hospital chair in front of me.

“I’ve had to go into hospital many times without warning and sometimes it’s been very serious. So if I’m not the one in the car waiting for her outside the school gate, she knows that’s most likely what’s happened and she worries I won’t come back.”

Lili nods solemnly and turns back to her activity. “She has witnessed some scenes she shouldn’t have done, due to my bipolar,” adds Sarah in a hushed tone. “I’ve had it since I was a teenager. At least I don’t try to, you know, do anything drastic these days. I would never do now that I have children. But I attempted suicide so many times when I was younger that it has ruined my kidneys and that’s another reason I often end up in hospital.”

Sarah’s main concern is the long-term effects of caring for her on Lili. “Obviously, I wish she didn’t have to be my little helper,” she says. “I recently watched someone on a TV programme who grew up caring for a blind mother and she said she looks back and resents her mum and really suffers mentally now. What if Lili winds up like that?”

Research suggests the long-term impact of caring as a child can indeed be harsh, with many young carers developing problems such as anxiety, depression, eating disorders and self-harm, many of which can stay with them into their adult lives. One study found that 45% of young adult carers declared they had some kind of mental health problem – twice the national average. “We were surprised it was so high, but when we told young adult carers, they were surprised it was so low,” says Morris.

Like most adults in Sarah’s situation, she does everything possible to bring some normality into Lili’s life. “She rarely misses school and she has a friend who comes round from next door, although I do sometimes have to say she can’t come because I need Lili’s help or because I just can’t cope with a fourth child in the house. I feel bad when that happens,” admits Sarah.

In addition, Sarah ensures Lili gets her own support – counselling through CAMHS (Child and Adolescent Mental Health Service), as well as attending a local club for young carers.

“I love the club,” says Lili, excitedly. “We get to do arts and crafts, make cakes, football and gymnastics. The mayor even invited all of us for a special day that he organised. There was an entertainer and we all got an award. It was amazing.”

Tellingly, Lili and the other young carers don’t talk about their caring responsibilities at the club. That’s the whole point, says Sarah. “It’s reassuring for these kids to know they’re not the only person in that situation, but ultimately they want to forget about it for a time and just be ordinary children – just as they should be.”

Lili also gets a bit of a break every other weekend when the family head off to Sarah’s parents. “It’s a good hour’s drive away, which is hard on me, so we always stay the night,” says Sarah.

“Pops is the one who taught me how to use sharp knives and he shows me new things to cook too,” adds Lili, who lights up when talking about these new tasks, although Sarah points out that there are limits. She’s not allowed to use the oven for example.

Lili also gets time out to visit her father, to whom she is close.

It was while Sarah’s was pregnant with Tyler that the scoliosis began. “At first, doctors thought it was just my pregnancy causing hip pain, particularly as I was born with clicky hips (hip dysplasia). But after he was born, a scan revealed what was really wrong, roughly about the same time I found out I was pregnant again, this time unplanned. It was a really difficult time,” says Sarah.

Lili’s school is supportive and indeed very proud of her, says Sarah. “They even held a special assembly about young carers so that both the teachers and pupils get a greater understanding of life for these kids. For a while last year, Lili got extra help at school because she fell behind, but she’s caught up now, which is great. We don’t do play dates, though. I think it’s probably because I don’t get to mingle with the other mums in the playground on account of having to wait outside the gates in the car.”

Lili says she has good friendships at school, which is reassuring to hear, particularly in view of a survey by the Carers Trust last year that found more than a quarter of children are bullied specifically because of their caring roles.

“We are also aware that some young carers get into trouble at school because their behaviour is misunderstood,” says Morris. “For instance, they may be late or absent because of what is going on at home. They may miss homework or a parent might go into hospital the night before an exam. All this kind of thing has implications for further and higher education too, as well as their chances in the job market. It’s great that Lili’s school is carer aware, but we’d like to see all schools identifying and supporting young carers to do well.”

There are times when Lili has had enough. “There are occasions that I ask her to sweep the stairs or clean the bathroom and she has a hissy fit,” says Sarah. “And there are times I shout when I shouldn’t. How many times do I say, ‘Sorry, I didn’t mean it, Lili’?” says Sarah, and Lili smiles.

I don’t mean the kind of smile that comes from fear of disagreeing or from apathy. Indeed, despite everything, Lili is clearly cheery – a natural optimist with vibrancy and spark. This is all she knows, after all, and in any case, the atmosphere of the house is a happy one, in spite of everything this family has had to cope with.

When it’s time for me to go, I ask Lili, who is now running a bath for her mother, what time she normally gets to bed. “Around 8pm,” she answers. “I’m usually pretty tired by then.”

Carers Trust works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. www.youngcarers.net